Astroturf “patient advocacy” group pushes to keep drug prices high

Patients Rising, [reporter Trudy Lieberman] reports, was founded by Jonathan Wilcox, a corporate communications and public relations consultant and adjunct professor at USC’s Annenberg School of Communications and his wife, Terry, a producer of oncology videos. . . .

Both Wilcox and his wife had worked with Vital Options International, another patient advocacy group with a special mission of generating global cancer conversations. She is a former executive director. A search of [Vital Options International’s] website showed that drug industry heavy hitters, such as Genentech, Eli Lilly, and Bristol-Myers Squibb, had in the past sponsored some of the group’s major activities . . .

Patients Rising is pushing back particularly strongly against Dr. Peter Bach, an epidemiologist at New York City’s Memorial Sloan Kettering Cancer Center, who has been outspoken about the high cost of cancer drugs.

Pretty horrible. Political advocacy is fine, and it could well be that there are good reasons for drug prices to remain high. But faking a patient advocacy organization, that’s not cool.

I will say, though, that artificial turf is a lot more pleasant than it used to be. 20 years ago, it felt like concrete; now it feels a lot more like grass. Except on really hot days when the turf feels like hot tar.

Full disclosure: I am working with colleagues at Novartis and getting paid for it.

This is similar to how some pro-“development” folks in Austin have formed “Friends of Neighborhood” groups to try to attract citizens to support their proposals. They (nominally) support “urbanist” ideas (such as more bike lanes, improved public transportation, more affordable housing) that lots of people support, but they then support promote development proposals that are counter to these ideas.

What’s examples of “development proposals that are counter to these ideas”? Just curious.

Because I’ve seen anti-development groups which oppose just about any change. It’s like because I purchased a house 30 years ago I should now enjoy a veto on anything new coming up in the neighborhood.

The limit of this idiocy to me is when they vehemently oppose things like overhead high voltage power lines because “they are an eyesore” and apparently reduce property values.

The latest example was supporting a new proposal for development on a large tract (I believe of land that was previously state owned) that, compared to previous proposals, reduced the number of affordable housing units (in favor of increased commercial development — especially bars), with no thought to increasing public transportation in the area or dealing with the increased traffic that the development would create. It also increased the amount of run-off in an area that is already flood prone.

“Like most Astroturf groups, its purpose [“to fight for access to vital therapies and services for patients with life-threatening diseases”] seems noble enough and its goals lofty,” writes Lieberman.

But in reality, she [Lieberman]says, the group’s main goal is “to push against the developing meme of unaffordable drugs.” And, like other Astroturf groups (such as Even the Score, which last year successfully persuaded federal regulators that not approving the drug flibanserin for the treatment of “female hypoactive sexual desire disorder” represented gender inequity), Patients Rising does this under the guise of being a grassroots patient organization.

“Astroturfers gather ordinary citizens from the grassroots to advocate for various causes while in reality shilling for the trade associations, PR firms, corporations, and political organizations that set them up,” Lieberman explains.

Here is another instance of astroturf advocacy. This time “close ties between advocacy organizations such as CureDuchenne and drug companies that are looking to gain marketing approval for new medicines.”

“Whose interests are being served when an advocacy organization lobbies vigorously on behalf of a drug that could earn millions in profits for a drug company? Tellingly, news of eteplirsen’s approval was often reported in the Business section of newspapers, rather than the Health section — and appropriately so, as the drug clearly is helping stock prices, with no evidence it helps or will help anyone’s health.”